Contested Illness in Context

An Interdisciplinary Study in Disease Definition

Harry Quinn Schone

• Publisher: Routledge
• Year: 2019
• Print ISBN: 9780367026448
• eBook ISBN: 9781000006933
• Edition: 1
• Topic: Scienze sociali
• Subtopic: Sociologia

What makes a disease real? Why is it that patients with chronic fatigue syndrome or fibromyalgia are doubted when they say they are in pain, and cannot access the same benefits of patient-hood that others can? What defines the limits of our belief and, ultimately, compassion, when it comes to disease?

These are the questions approached in this book, which draws upon patients' experiences and situates them among a diverse set of literatures, from the history and philosophy of medicine to the sociology of health and disease. The question of a patient's identity and their understanding of disease is often assumed to emerge from their relationship with healthcare, but the case is made here that other, inter-personal factors are more salient. What a patient with a contested illness comes up against is not simply a medical categorisation – it is a prevailing notion of disease across society, and one they struggle to assimilate themselves into.

Contested Illness in Context will appeal to students and researchers interested in fields such as the history and philosophy of medicine, the sociology of health and illness, medical anthropology, or disease and illness generally. It may also interest patients and doctors who struggle with difficult medical cases.

Part 1

A language of disease

Chapter 1

Contested illnesses

Introduction

By choosing to look at contested illnesses I have quite deliberately picked a group of diseases that live within the crux of many philosophical problems.¹ These are the conditions unaccounted for by biomedical models, the ailments that debilitate and destroy without explanation or acceptance. They straddle both the physical and the mental, but share a sense of dislocation; doctors are not trained to help their non-specific pain, partners are not naturally inclined to sympathise and institutions are not willing to accept them as genuine. They are precisely those illnesses which disconnect from our expectations of disease, and in the gap created lay bare our previous assumptions about what a disease is or what is necessary for someone to be sick. But is this a useful category, or indeed a category at all? Is it possible to adequately define a contested illness?

In this chapter I will discuss the features of a contested illness, starting from Swoboda’s (2005) definition and using the contrasting examples of asthma and chronic fatigue syndrome to sketch a more complete outline of the concept. I will also discuss how one very common, almost essential aspect of contested illnesses – their chronic nature – lends itself to philosophical evaluation.

Contested illnesses

At first glance (and this is the point), it might seem that there are so many ways that a disease could be considered ‘contested’ that describing one as such becomes virtually meaningless. However, in this section I aim to show that it is possible to demarcate contested illness in a meaningful way. Though it’s true that many diseases contain disputed elements, the conditions I write about in this work are figures of doubt in their entirety – the type of contestation that occurs is fundamental not specific. They are illnesses that appear to us not as controversial because we don’t know their exact mechanism or which drugs are most effective at treating them but because in some sense we suspect them to not exist. They are, in my terminology, ontologically contested. But first, in what ways might a disease be considered contested and why are these criteria often inadequate in the making of a bona fide contested disease?

Illnesses can be disputed clinically, pharmaceutically and legally, with arguments springing up regarding aetiology and risk factors as well. Politically too, they can be contested and there have been well known and large-scale campaigns around individual illnesses, which tend to focus on changing perceptions of a certain disease, altering the tone of education, and improving access to resources, information and infrastructure. A side-effect of these initiatives is that often disenfranchised patients feel like they have been able to recover some dignity and achieve a form of moral reconciliation with a society that has stigmatised and marginalised them. The patient response to the AIDS crisis in the 1980s is almost the epitome of this kind of political contestation, though equally the work of disabled activists, the blind and the deaf movements as well as women’s health campaigns could be included here (Epstein, 1996; Lane, 1999).

The way that doctors think we should respond to diseases is another source of conflict. For any given condition there exists a spectrum of medical options. Different treatment programmes are often favoured and promoted across different localities, between individual hospital departments and by doctors themselves, a process which reflects the fragmented, specialised, commercial nature of modern medicine. If alternative remedies are taken into account then it becomes clear that for any condition there exists a plurality of possible medical reactions, not all of which could be considered complementary. Yet this is considered fairly ordinary, and offering patients choice is usually not framed as contestation.

Pharmaceutically, diseases are contested in the sense that a complex and not always symbiotic relationship has emerged in some countries between drug companies, doctors and patients (Elliott, 2011; Goldacre, 2012). I separate this from the clinically arguments discussed above because often this conflict comes to be about more than simply the ‘best’ way to treat a specific condition. The growth of behavioural disorders, bringing with them fears of over-diagnosis and medicalisation, are a good example of where illnesses become pharmaceutically contested, the arguments being centred around the administration of drugs, the outward pressure on diagnoses, and explaining to some degree both the supply of and demand for treatments (Healy, 2004; Healy, 2012; Lane, 2008).

Related to the sometimes murky clinical and pharmaceutical picture, many diseases could be considered to be aetiologically contested. This terminology is loose, but its basic essence is easy to discern: how exact, numerous and contradictory are our explanatory models? Do different descriptions of potential causality compete in the academic space for legitimacy? It is clear that having a full aetiological picture is no prerequisite for diagnosis, prognosis or treatment. Autoimmune diseases are a case in point of this kind of conflict, as discussions around aetiology remain speculative and varied (Alzabin and Venables, 2012). Even when considering diseases whose mechanism or causes we have known for some time, it should be noted that research is constantly being undertaken to expand our understanding. Many common conditions, whose clinical features have been recognised for centuries, have only relatively recently begun to be understood more fully from an aetiological standpoint and often their histories are ones of treatment before understanding, or indeed treatment on the basis of false understanding (Clarke, 2012).

Legally, diseases have become central to fights over dismissal from work, welfare access and compensation. Employment rights rapidly expanded during the 20th century, and part of this process was the acknowledgment that work environments can make people sick, that sometimes people are too sick to work and that this ‘right to be sick’ needs to be protected and legislated for (not to say there were not examples from the 19th century: Schivelbusch, 2014). However, given the clear conflict of interest here between the state, employers and the individual, it is inevitable that vigorous and lengthy legal battles will and do ensue. Often what is under scrutiny is the legitimacy of symptoms, the extent to which they disable and the degree to which prognosis of the condition suggests functional limitation.

The reason for this brief exposition of the various ways in which aspects of disease can be contested is to illustrate the simple point that a condition may be disputed in some or even most of the ways above and still not be considered a ‘contested illness’. There is a further jump that must be taken in order for a disease to become contested, which is hard to precisely quantify, but involves a composite of the above, leading the medical community and society at large to fundamentally doubt the condition in a stronger, more ontological sense. It is this questioning of being I have taken to be the hallmark of a contested disease. How can we develop this definition?

A good place to start is to look at the work of Swoboda (2005), who provides the following five points as key features of contested illnesses:²

1. Their aetiologies are ambiguous.
2. Their existences are linked to other diagnoses and co-morbid conditions.
3. Their treatment regimens are unclear.
4. Their legal, medical and cultural classifications are disputed.
5. Their statuses as legitimate illnesses are highly controversial.

Taken together, this schema is useful for understanding how a condition comes to be considered contested. What is perhaps unclear is how some diseases can be said to fulfil numbers 1–4 without necessarily entailing that the fifth condition becomes a feature of the illness. How is it that an illness becomes or is contested in four of the ways mentioned above but does not lose its status as a legitimate illness? And if we establish that the first four criteria are not necessary for describing a contested illness, then how do we avoid tautology in our definitions?³ In this section I will approach these questions with a mind to revising Swoboda’s list to more accurately capture the key components of disputed, or, as I have phrased it, ontologically contested diseases.

To explore this, let us take two examples – asthma and chronic fatigue syndrome (CFS) – and discuss why one is ontologically contested and the other is not with reference to the above formulation. Asthma is chosen here as, superficially, it fulfils much of the criteria above, and yet remains emphatically not a contested disease. CFS is, however, very much considered to be a contested illness, and the following discussion should hopefully clarify why it is rendered such while asthma is not.

Chronic fatigue syndrome versus asthma

CFS presents significant diagnostic and professional challenges for healthcare providers. Patients complain of tiredness, lethargy and dangerously low levels of energy. Cognitive difficulties appear simultaneously; forgetfulness and trouble focusing through to severe migraines and depression. Exercise is painful and can often lead to lengthy recovery periods of forced inactivity and musculoskeletal pain. These symptoms ebb and flow and change day to day, but rarely disappear entirely. There seems to be no abnormality in standard clinical indicators of illness: blood pressure, blood sugar and heart rate don’t appear unusual in patient populations, clinical examinations proffer no results, CAT scans likewise. Overall, it is extremely difficult to diagnose CFS in any orthodox manner, and when given it is normally classified as a diagnosis of exclusion, that is, a diagnosis arrived at after other possibilities have been eliminated. The criteria generally used require persisting fatigue for at least 6 months which is not explained by other medical or psychiatric conditions and is not alleviated by rest (Fukuda, 1994; NICE, 2007).

To return to Swoboda’s definition, we can note immediately that the aetiology of CFS is unclear. However, the same is true for asthma. Causal models that deal with asthma tend to focus on highlighting prenatal, childhood, environmental and genetic risk factors which include firm links such as maternal smoking, family history and environmental pollution and weak links like exposure to allergens, diet and nutrition, stress levels and breastfeeding (Subbarao, Mandhane and Sears, 2009). All factors are sufficient but not necessary, and overall the aetiological picture is stubbornly multifarious; despite a large amount of research over a number of years, it is difficult to discern clearly what causes asthma.

Similarly, CFS has no universally accepted aetiology, but rather numerous conceptual models based around physiological, psychosomatic and psychological frameworks (Tveito, 2014). It does differ from asthma however, in the sense that far more moral onus is put on the various causal explanations. The conflicts that exist tend not to be probabilistic discussions about the importance of this or that influence on the condition, but represent a more dogmatic, factional process. ⁴ Many patients strongly reject all models which identify psychosomatic or psychological factors as primary agents from the conviction that what they are suffering from must be organic. The implication here is that if their condition is not organic then the twin spectres of control and responsibility come into focus: the supposed control of symptoms and the subsequent responsibility for them.

What is different, then, is that to CFS patients, the contested aetiology of their condition has ontological consequences in a way which the causal relationships behind asthma do not. This is because in the case of CFS, the aetiology exists in an explanatory void – it is a conflict about the existence of evidence, rather than what the evidence means. Doctors cannot say with confidence what causes either condition, but with asthma this ignorance is buttressed by various smaller pieces of knowledge: it is like we have most of the puzzle pieces but can’t put them together to form the complete image. Determining the aetiology of CFS is a far less certain exercise, and the lack of substantive evidence one way or the other contributes to suspicions that without causal links of some kind we should question whether we are looking at a disease at all. From this short comparison it seems that the Swoboda’s first condition needs to be modified or expanded to take into account gradations in the types of aetiological ambiguities that are present.

Her second condition – that contested illnesses are linked to other diagnoses and co-morbid conditions – again appears to apply to both asthma and CFS. The former has long been known to be strongly associated with and in some cases exacerbated by many other conditions. In two separate, recent reviews, a high number of comorbid conditions were identified, including rhinitis, gastroesophageal reflux disease, bronchitis, atherosclerotic cardiac disease, psychopathologies and numerous others (Boulet and Boulay, 2011; Ledford and Lockey, 2013). The precise relationship between these conditions is important to clarify as they can often obscure diagnosis and make treatment more difficult. Establishing links between other diseases and asthma has consequences for patients but also for public health policy.

CFS is also known to have a high comorbidity with other diseases. Fibromyalgia, irritable bowel syndrome, multiple chemical sensitivity, interstitial cystitis and psychiatric conditions such as depression and anxiety disorders have all been found in high prevalence among CFS patients (Aaron et al., 2001; Denise et al., 2012). The way that these conditions interact and influence each other is unknown, and again highly disputed by patients in a way that is unique to contested illnesses. For example, many CFS sufferers would argue that depression is a result of their debilitating fatigue, whereas researchers often posit that this connection is actually the inverse, or that both stem from the same source. Asthma patients do not have such a hostile relationship to their comorbidities.

The crucial point here is that while asthma is associated with mostly ‘organic’ conditions, CFS finds itself entangled in a web of other contested illnesses or psychiatric diseases. In fact, the one comorbid feature of asthma that is resisted more than any other by patients is the suggestion that there are psychosomatic elements to the disease, hence literature which urges a careful and sensitive approach to the topic (Muramatsu, 2001). Also notable is that the Global Initiative for Asthma (GINA) lists numerous factors which contribute to the development of asthma but only notes that emotional stress and psychiatric conditions can exacerbate the disease (Moes-Wójtowicz et al., 2012). This is in contrast to the ICD-10 (the 10th revision of the World Health Organization’s International Statistical Classification of Diseases and Related Health Problems), which places psychological and behavioural causes alongside organic and environmental ones, indicating that there is a slight discrepancy between the medical view and patient outlooks.

So, to look again at the criteria, it seems in this case that expansion of the second point is also necessary. What is important is not so much that comorbidities exist, but the types of connections themselves that the condition has with other diagnoses and the perceived validity of those diseases. Especially relevant here is the question of psychiatric and psychosomatic disorders: if it appears that an illnesses is mostly associated with these types of diseases then I suggest that it will in turn be more likely to be considered contested.

The third feature under discussion here is that in general the treatment regimes of disputed illnesses are unclear. In this case it seems that there is more of a clear dichotomy between my two examples. While the treatment of asthma has certainly changed historically, it is generally accepted that in most cases we can now manage the symptoms effectively in wealthy nations both in acute emergencies and in the long term. There would appear to be very little that is ‘contested’ about this.

CFS presents far more significant challenges for doctors and patients, as few treatments have been found to have any consistent effect on those with the illness. A plethora of different ideas and potential cures have been suggested, and patients attempt various regimes, largely without success. Responses to treatment are extremely idiosyncratic – what works for one rarely works for another – and those with CFS can grow pessimistic over time as to the effectiveness of any new programme that is suggested to them. Attempts to relieve symptoms such as chronic pain likewise suffer from inconsistent patient response which makes it difficult to draw conclusions across the whole condition.

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Table of contents

• Cover
• Half Title
• Series Page
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• Acknowledgements
• Introduction
• PART 1: A language of disease
• PART 2: Contested illness in context
• Conclusion
• Bibliography
• Index